Oncologist said dad has 1-2 years left - Advanced Prostate...

Advanced Prostate Cancer

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Oncologist said dad has 1-2 years left

Fpc123 profile image
22 Replies

hi all,

My dad has been living with stage 4 prostate cancer for 12 years. Up until about 9 months ago ADT was working for him and he maintained a good quality of life.

in January we found out that it had become castrate resistant and there was wide spread spread to his bones, lymph nodes and liver. he started on docetaxel in march. His first scan after 3 rounds showed some shrinking, but mostly it stayed the same/did not grow. Second scan showed the same after the following three rounds, but there was some growth on a lymph nose into the ureter and he now has a nephrostomy bag.

His most recent scan showed he wasn’t responding to the docetaxel anymore and the lesions on his liver grew, as well as new spots there. He will now be switched to carbataxel and carboplatin. The oncologist said if he doesn’t respond to that, then he would have 1 year and if he does respond, he’d have 2 years.

There is also the option to do pluvicto in Montreal (we live in Toronto) but it’s not covered and costs $100 000 to do

My dad is in so much pain if he is not on strong pain meds, he’s short of breath, he sleeps most of the time, and has lost a significant amount of weight. I don’t know how much more treatment he can tolerate. He’s been too emerg at least a dozen times with complications and infections throughout the last 9 months.

He’s being treated at princess margaret hospital in Toronto which is one of the best if not the best place to get treated for cancer in North America so I know he’s in good hands.

But if anyone has similar experiences or treatment options in this situation I’d love to hear about it. I’m not as well versed as others in this group with the medical terminology and it’s a bit overwhelming. TIA

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Fpc123
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22 Replies
MJCA profile image
MJCA

Hi,

I am SO sorry to read about your Dad’s issues. One thing that surprises me is that he was never placed on one of the second generation ADT meds such as Erleada, Xtandi, Zytiga or Nubequa. There is also Provenge, but he may be too far along for that med. There are also clinical trials, has your doctor helped look into any trials? There is also a biologic, Keytruda. The main concern, I would think, is the metastasis to his liver. Please keep in mind that EVERYONE’S body has its own timing WRT to how much time is left. I know medical coverage in Canada is regulated by each province. I would think if a treatment is not available in your province of Ontario, there would be some form of agreement between Ontario and Quèbec. Best of luck, please keep us informed.

Fpc123 profile image
Fpc123 in reply toMJCA

Thank you for your response and suggestions. My dad has tried to shield us a lot from his diagnosis and treatment until he couldn’t anymore. I know he said in the past that he was put on a second ADT drug after the first one he was on stopped working. I don’t know which ones he was on but I’m confident they wouldn’t have jumped to chemo until they exhausted the ADT.

I will look into keytruda as well.

What concerns me is how my dad is presenting, he is very unwell day to day. Even being off the docetaxel now for a month or so. I wouldn’t be surprised if he doesn’t make it as long as the doctor said with the way he is. I don’t want to sound hopeless, but I also don’t want him to keep suffering. This disease just takes and takes until there’s nothing left.

MJCA profile image
MJCA in reply toFpc123

Oh I hear you. I have been dealing with this disease for 19 years. Yes, it takes and takes and only gives back with pain and metastases. He is lucky to have you!

Fpc123 profile image
Fpc123 in reply toMJCA

I’m so sorry you’ve had to deal with this first hand. Thank you for your support

MJCA profile image
MJCA in reply toFpc123

I’m used to dealing with it on my own, but thanks for your kind words. I’m pretty sure it’s the lesions on the liver that are giving him so much trouble. My Mom had metastasized liver cancer (obviously not from the prostate). It was quite painful for her. You may need to corner the doctor and have him/her explain what meds he has been on, what is planned for the future. And what can be done for pain management?

Fpc123 profile image
Fpc123 in reply toMJCA

Thank you, 19 years is a very long time to live with this disease. I hope you’re not suffering too much and are feeling as well as you can be.

And yes, the prognosis with the liver metastases is grim. I’m planning to go to his next appt with his oncologist to ask more questions. He’s connected with a pain doctor, and he’s going to be getting stronger meds.

MJCA profile image
MJCA in reply toFpc123

Sorry just saw your reply. You know this bitch is on my bones and luckily I have a high pain threshold. My only unfortunate side effect is that docetaxel killed my balance.

At this stage a pain doctor is very important. Just keep him comfortable.

GP24 profile image
GP24

There is a trial he can join in Toronto at Sunnybrook Research Institute: clinicaltrials.gov/study/NC... It is for the treatment of patients with later-line mCRPC who have failed one prior new hormonal agent (NHA) and one or two prior taxanes. The drug is opevesostat.

Fpc123 profile image
Fpc123 in reply toGP24

Thank you so much

Fpc123 profile image
Fpc123 in reply toGP24

I assume the oncologist would recommend the trial after they try the new chemo?

hopeful1956 profile image
hopeful1956 in reply toFpc123

Speak to his Medical Onc about trials he/she recommends. My husband is in a clinical trial at Sunnybrook for BRCA2 gene mutation. Wishing your dad the best with this awful disease.

Fpc123 profile image
Fpc123 in reply tohopeful1956

Thank you, I’m sorry your husband is going through this and I hope the trial is successful.

My dad doesn’t have the brca gene so I don’t think he’d qualify. Do you know if immunotherapy is only for people have the brca gene?

hopeful1956 profile image
hopeful1956 in reply toFpc123

Honestly, I don't know much about immunotherapy. My husband has Stage 4 with a few bone mets, so I know there is no cure. Hopefully he will be around for several more years.

Fpc123 profile image
Fpc123 in reply tohopeful1956

I hope so too, and that he’s feeling as well as possible in his situation. 🫶🏻

GP24 profile image
GP24

You should bring this trial up when you see the oncologist and mention that you are interested to join. He may not be aware of this particular trial.

The link I provided has a phone number to call if you want to get into this trial. You could call that and ask what the investigator at Sunnybrook recommends you to do.

Fpc123 profile image
Fpc123 in reply toGP24

Thanks so much. I will cal. However I noticed that to qualify you can have no more than 6 docetaxel cycles and he’s had 8. I will still look into it and bring it up with his oncologist Tuesday

GP24 profile image
GP24 in reply toFpc123

First of all I would not mention that. In the Merck press release they write "one or two prior taxanes", this means a treatment with several cycles of docetaxel and a treatment with several cycles of cabazitaxel. Therefore I think the 8 cycles do not really matter.

merck.com/news/merck-announ...

NecessarilySo profile image
NecessarilySo

Please read my bio about heat and lycopenes. I don't know if they help against CR but it must be worth a try.

j-o-h-n profile image
j-o-h-n

Dear Fpc123,

This may sound trivial but how old is your dear Father?

Good Luck, Good Health and Good Humor.

j-o-h-n

Fpc123 profile image
Fpc123 in reply toj-o-h-n

not trivial! He’s only 62

j-o-h-n profile image
j-o-h-n in reply toFpc123

I'm sorry I used the word "trivial" but I meant it as trivial compared to all of the issues that you detailed in your post (above) regarding your dear Dad. Of course his age is important to you and to his fight against those tiny bastards. Keep fighting!!!

God Bless you and God Bless your Dad.

P.s. It may be a good idea to copy the pertinent details in you post and paste them to his Bio. It helps your Dad/you and helps us too. Thank You!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

TJGuy profile image
TJGuy

You may want to look into places that are much more affordable. There were a number of people traveling internationally to Australia, Europe and India. The India hospital was very affordable, I don't want to misspeak but three maybe four years ago a number of people on this group went there. The woman doctor was trained in Germany, the cost was about $10,000 for treatment and hotel if I remember correctly. You would fly to India and the hospital would transport you, you stayed in a wonderful hotel. Treatment was top notch.

I've been reading these posts less frequently over the past few years so no keeping up with people who may have done this more recently.

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